Hi everyone.  There's a little girl at my school who is I believe 6 now.  When she was 4 months old (same age as my son now!  :-[ ), she had an ischemic stroke.  I spoke to her mom the other day and asked her if they'd ever been told about moyamoya.  The doctors never did determine what caused the stroke.  I recommended she look into it and mentioned Dr. Steinberg's name.  The child was seen at Stanford, but I don't believe Dr. Steinberg was ever involved.

Anyway, the girl's mom told me that if I knew anyone suffering the effects of a stroke, especially children, she highly recommends something called hyperbaric oxygen therapy.  Apparently it's what is used to treat divers who get the "bends" from ascending too quickly.  She sings its praises because the doctors saw such an improvement in her child and in another child being treated for "saggy baby" syndrome . . . I think that is what she called it.

Okay, my question: has anyone ever heard of this treatment?  I would imagine that since so many people here have dealt with strokes, especially in kids, maybe someone here has heard of it.  I never had.

Diane

I've read a little bit about this but not enough to comment on other than I saw it being used on a recent episode of "ER".  I love that show! ;;D

Lisa

I hardly ever get to watch any TV these days, but I did see that episode, and the young British intern who had to be in the chamber with the child as he was treated was claustrophobic.  Was it a child being treated?  I don't remember.  Anyway, I had not thought of it for stroke and, consequently, possibly moyamoya.  I thought I would just be referring the mom to this site and the possibility of consulting with Dr. Steinberg (since we're pretty close to Stanford).  She obviously knows a lot about the treatment of stroke in kids from her experience.

Diane

Hi Diane,

We were recommended Florida Neurological Institute in Clearwater Florida.  Dr. Hammesfahr's work was recognized  in 1999 with the nomination of a Nobel Peace Price for his work in medicine and physoilogy.  

We took Patty there this past January for 3 weeks.  There were children there who were in the hyperbaric therapy.  The few parents that I spoke with felt the therapy benefited their children.  Patty was not on that program.     She was being treated with different meds.  She felt her head was clearer, we will have a follow up visit in the next few months.      


The website for FHI is as follows if anyone is interested.


http://www.floridaneurologicalinstitute.com/


Janice

Way to go, Peak, Lisa and Janice-------maybe this website will assist in finding a cure [smiley=huh.gif] or alternative forms of treatment  [smiley=huh.gif] for those suffering with moyamoya...especially the children.........you never know.........P

That's so funny you mentioned that .My husband and I were just talking about that this morning.He has started a bit of research on it.We will be seeing Dr. Scott for our 2 yr check soon and wanted to discuss it with him.We know there is one hospital nearby that has a chamber but not sure yet if they do stroke treatment.I have heard that it really can make a difference even in old strokes.It certainly seems safe enough I would do anything to help Kathleen gain back more of what she lost.As time goes by I worry that kahtleen will never have functional use of her left hand.If this could help her I'm all for it.Any ifo on the subject that anyone has is certainly appreciated.
Mary Grace

Mary Grace,

What Denise's mom told me was that her daughter's hand was basically permanently closed up, but after the therapy, she can open and use it.  I don't know the child very well, but she did take soccer classes with my husband for part of last school year when she was in kindergarten, so maybe I can ask him what he noticed.

Diane

Mary Grace,

My sister Patty's left hand is closed up.  She calls the hand gimpy.  We will be following up at FNI in a few months.  

I will get an email off to them asking the question about the hyperbaric chamber.  I will let you know more later.

Janice

Diane and Janice, I would love to hear moe about this.It brings tears to my eyes just thinking that there is hope.It has been feeling hopeless lately only becuase I am realising how long it has been since her last stroke.I try not to think about it and be positive.All that I have heard so far about this therapy is possitive. the biggest stumbling block is that insurances most often won't pay for this.....Thanks.....I appreciate the help.
Mary and Kahtleen

Mary and Kathleen---I am so positive about thinking of the possiblities....also, all of you other ladies....let us know about the checkups......you never know......keep us all posted on the progress.....Peak.....talk to Alex about the little girl on the soccer team and how well she progressed during the season....maybe you could arange to speak to her mom in greater detail and learn more about this....God Bless....Pat

Well, she wasn't on a team with him, just in a class.  She was in kindergarten then and she is in first grade now (about to finish for the year).

She is in a regular class at our school, does P.E. with her classmates, etc.  So, from that point of view, she has been able to lead a normal life.  Her mom mentioned to me when we spoke that she does not get as tired as she used to when they go for walks.

Gotta run!
Diane
P.S. Pat, people here don't know who Peak is.  Call me Diane!

ok, Diane..sorry...this will take some getting used to...I haven't called hyou by your real name in years....Pat

this therapy sounds very interesting i would love to hear jake talk again and be able to open his hand what should i do? ask dr. scott? or his regular ped dr. i will continue to follow the post. thanks for the info.